Written by Kayrene Mimms

I never imagined myself speaking from a pulpit until my lupus support group member Ta’shana, asked me to share my story at her church. I am an introvert by nature—but after surviving a near fatal lupus flare eighteen years ago, I became passionate about sharing my story and helping to increase lupus awareness as a speaker.

About lupus

The National Institutes of Health (NIH) describes systemic lupus erythematosus (lupus) as “a chronic (long-lasting) autoimmune disease that can affect many parts of the body. Lupus occurs when the immune system, which normally helps protect the body from infection and disease, attacks its own tissues.”¹

“Lupus is a complex and mysterious disorder. It arises when the cells that are supposed to protect your body from disease mistakenly assault your own healthy cells and tissues. This attack from within can damage your joints, skin and most other parts of your body.”²

In lupus, any part of the body can be affected, including the blood, blood vessels, brain, central nervous system, heart, kidneys, lungs and skin.

My lupus journey

One morning when I was four or five years old, I woke up and discovered sore spots on my tongue. Living on a farm in a rural area during the 1950s was not a place or time where parents rushed their children to the doctor’s office or emergency room. I think home remedies were used, or the issue resolved on its own. I suspect that having sores on my tongue was an early indication that I might have lupus.

Throughout my life, I experienced more lupus-like symptoms, such as blistering after lengthy exposure to the sun, chest pain when taking deep breaths, cold hands and feet, discoloration on the cheeks, discoloured blotches on my arms, extreme redness of my eyes, itchy and flaky scalp, hair loss, low blood count, and painful, sore and swollen joints and muscles. These symptoms appeared at different times, and now I believe they may have been caused by lupus.

In my 40s when I was having skin problems, the dermatologist recommended that I get an evaluation for lupus. Later when I was having issues with my eyes, the ophthalmologist recommended another evaluation. Both times, the results were negative. The final straw came when I had trouble walking and suffered extreme cold while vacationing in a very hot climate. A few weeks later, I also experienced loss of appetite and extreme fatigue. Several things were happening at the same time. The chase was on then, but there was still no definite diagnosis. Finally at age 59, I received a definite diagnosis of systemic lupus erythematosus (lupus).

My biggest challenge occurred a few weeks after my diagnosis and before I saw my rheumatologist for the first visit. I experienced nausea, extreme pain and swelling, difficulty in mobility and deep coughing that produced pinkish mucus. I went to the hospital emergency room where problems with my lungs and heart were discovered. I was admitted to the hospital and almost “bled out” the same night. I ended up in the intensive care unit (ICU), being sedated and intubated intermittently for over 60 days.

The doctors did not expect me to live, but I’m convinced that God had another plan.

When I could finally be moved from ICU to a regular hospital room, I couldn’t stand, couldn’t walk and could barely talk, just a whisper. So I had to stay in rehab for a month. During my rehab stay, I learned to walk with a walker, use techniques that helped my speech, go up and down two steps, cook from a wheelchair, walk on carpeting, transfer from the bed to the wheelchair, and basically to do many things that we take for granted. After a month in rehab, I could walk with a walker, but still had to use a wheelchair most of the time. For several months, I did more therapy at home and then as an outpatient.

The timeline of my near-fatal lupus flare

13 February 2006: I walked into the hospital emergency room.

April 2006: I was taken to the Rehabilitation Institute of Chicago (RIC) on a hospital bed.

17 May 2006: I left RIC in a wheelchair, being able to use a walker for short periods of time.

October 2006: I was free of the wheelchair and walker and got around with a cane. I still have access to my cane, but it’s seldom that I have to use it.

Since God allowed me to overcome that near fatal lupus flare in 2006, I have discovered a new calling: to help increase lupus awareness and raise funds for lupus community support and research that would lead to more efficient diagnostic procedures, better treatment plans and eventually a cure. I am committed to helping to solve the cruel mystery of lupus and alleviate its devastating impact on millions of lives.

When I was well enough, my husband, Cecil, and I began volunteering with the Lupus Foundation of America, Illinois Chapter (LFAI), now known as theLupus Society of Illinois(LSI). LSI is a non-profit organisation with a mission to “promote lupus awareness and complement the work of healthcare professionals by providing personalized resources for the lupus community while supporting research”.³

Cecil and I volunteer with LSI in various ways, including representing LSI at area health fairs, speaking to local churches and organisations, and serving on committees that help to raise funds to support lupus patients.

My latest venture is what I call The Lupus Book Project. I have coordinated and published two books about lupus. The title of the first book is: Fighting Lupus Battles: Hope For A Cure (True Stories from Lupus Warriors). It includes more than twenty true stories about real people who are living with the effects of this mysterious and unpredictable disease.

With medical commentary from two of my doctors, as well as general educational information about the disease, the book was written to help raise awareness, broaden knowledge, encourage understanding and compassion, improve provider/patient communication and relationships, and promote research.

My second book is Fighting Lupus Battles: Living, Hoping, Searching, Climbing, Researching for the Cure. It includes updates and stories from more lupus patients and information about lupus research.

Both books are available at my website:kaymimms.com.

Managing my lupus

I am not a medical professional; I’m sharing my story for informational purposes only. Based on my own personal experiences with my care team and other lupus warriors, I practise several activities that I think help me to manage my lupus condition. They include educating myself and paying close attention to my body, mind and spirit. It helps me to participate in my own care by getting regular check-ups, making sure I understand and use professional medical recommendations and taking medications as prescribed.

I try to establish realistic goals and priorities for managing my time and energy. Maintaining a good support system of family, friends, medical professionals, community organisations, faith-based groups and support groups helps me to stay involved in social and inspirational activities as much as possible.

It’s important for me to limit my time I spend in the sun. Even though I hate wearing hats, I try to remember to wear one if I’m going to be outside for any length of time. Plus I use sunscreen every day, even if I’m going to be inside. I try to follow guidelines for healthy diet and exercise schedules. I try to do what I can to be as healthy as possible, and I leave the rest to God.

Today I try to express gratitude for every day that I am still alive and able to take care of myself. I awake each day being thankful to God that even though I have painful and sore joints and find it difficult to walk sometimes, even though my voice is raspy and I am not able to sing like I used to, even though I still have a mild productive cough, even though I fatigue easily, even though I forget or may not fully understand things at times, even though I second-guess most things I do, even though I have to take lots of medications, Iam still alive and learning to live with lupus in a positive and productive way.

“Surely goodness and mercy shall follow me all the days of my life…” (Holy Bible, Psalms 23:6)

In the United States, Lupus awareness month is May, and 10 May 2024 is World Lupus Day.

References

[1] National Institute of Arthritis and Musculoskeletal and Skin Diseases. NIAMS; 2017 [cited 2 Apr 2024]. Systemic Lupus Erythematosus (Lupus). Available from: https://www.niams.nih.gov/health-topics/lupus

[2] NIH News in Health [Internet]. 2017 [cited 2 Apr 2024]. Looking at Lupus. Available from: https://newsinhealth.nih.gov/2011/11/looking-lupus

[3] Lupus Resources & Support [Internet]. Lupus Society of Illinois. [cited 2 Apr 2024]. Available from:https://www.lupusil.org/lupus-rsc-spprt/

Editor’s note: Please reach out to hello@rarerevolutionmagazine.com to share a piece in this column.

In our Sunday sessions column, we invite spiritual, faith and community leaders to share their wisdom with the rare diseases community. We also invite members of the community to share their reflections on how spirituality or faith has been a part of their rare disease journey.

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